I might not look like I have a disability, but actually I have several. These disabilities really affect my day to day life and it’s even worse in winter to the point that if I didn’t have to move an inch, I wouldn’t!
The term ‘hidden disability’ basically means a disability that isn’t overtly obvious.
So, how do I define the term ‘disability’? In a nutshell, having a disability means living with something that limits your movements, senses or activities. After my ileostomy calmed down, so did my symptoms from ulcerative colitis – because the active disease was removed. I felt so much better.
It didn’t take long though before I noticed my joints were becoming worse. In reality, it’s likely they were like this for a long time, but the pain is now more noticeable because the pain from my bowels has been dealt with.
My joints swell and stiffen up. They can cause a lot of pain whether I’m sitting, laying still or moving about, and you wouldn’t know this to look at me.
I have Hypermobile Ehlers-Danlos syndrome (hEDS). This was diagnosed by a rheumatologist. My first appointment was on a particularly bad-pain day, and the doctor decided to run some tests to figure out what was going on with me. But, there is currently no test to accurately confirm that someone has hEDS so getting from my initial consultation to diagnosis took about a year. I was pleased to eventually have an answer and the condition explains why I had experienced different symptoms to other ulcerative colitis patients, such as chronic constipation.
In addition to the hEDS, my ileostomy could be considered a disability, and this is almost always hidden under clothes!
I don’t like thinking of my stoma as a disability because it has dramatically improved my quality of life. But it does come with issues that remind me it is a disability in some ways. For instance, when it leaks or pancakes. Blockages can result in a trip to A and E so that’s something to be very aware of, us ostomates can’t usually just eat whatever, whenever.
I also have Postural tachycardia syndrome (PoTS).
PoTS is an abnormal increase in heart rate and drop in blood pressure that occurs after sitting up or standing. Typical symptoms include dizziness and fainting.
I get this when I go from lying down to sitting up. I generally feel a bit light headed if I do this too quickly. The most severe symptom I get is when I go from sitting to standing and everything goes dark, I get really tingly and often drop to the floor – the worst part of this is I have usually crossed a room before it happens!
Despite all of this, I try to live my life to the fullest and enjoy as much of it as I can.
I will continue to do so even if it means I take longer because of the pain or suffering through, knowing I won’t be as well for a few days after. I need to be able to be the mum and wife I always hoped to be, regardless of my hidden disabilities and all.